JOAN’S WEEKEND BLOG – NOVEMBER 15/16, 2008 – OUR “WEB OF CONNECTIVENESS”

We have the ability to touch, change, and improve the lives of whomever we meet, either in person or on the Internet (as we do here on this website), by offering advice, physical assistance, emotional support, and
 “networking”.

When one hears the term “networking”, what often comes to mind is a group of executives at a cocktail party  offering high powered jobs to one another.  I would like to give you a different view of networking - examples of how you and I have networked to make each other's lives on this AD journey a little smoother, a lot more informative, and maybe a bit more interesting.

We had never heard of Ruth Boshart from New York until we met her on this website and she told us about her crusade to bring Project Livesaver to the counties in her area. I then started informing everyone I knew about this valuable service for wandering AD patients, and she tells everyone with whom she speaks, about the assistance this website and your message board support provides to spouses of AD patients.

We had never heard of Trish Balfour until she wrote on this website, and sent me the CBS video about her husband and his family’s struggle with EOAD. Now Trish has convinced me to bring Sid to the Washington DC Alzheimer’s forum to meet her husband, and attend the meeting of Alzheimer patients speaking and advocating for themselves.

We had never heard of Tony Pesare until he wrote on our message boards, with passion and heartbreak about his young wife’s rapid descent and death from EOAD. Tony’s unrelenting advocacy to bring awareness of EOAD to the world, spurred me to go to Washington last May, and together we experienced an adventure of learning and teaching, that not only exhausted us, but formed a bond of friendship. Through our advocacy, we have spurred some of you to advocate in small ways by writing letters and signing petitions,  to more extensive ways by speaking to groups.

Until I found out about it through someone on this website, I had never heard of Tracy Mobley and her camp for children of EOAD parents, a camp for those children to get away for a week in the summer to “network” with kids who understand the unique issues and challenges they face. And hopefully, through this website, this information has been passed on to those in need of such services.

We need each other. The more people with whom we connect and help, the wider our web becomes, and the higher we are able to bounce. These are not my ideas. They did not come from me. They come from the philosophy of the guest speaker at the conference I attended on Thursday – Dr. Teena Cahill. She “connects” everyone she meets with someone else she knows who can help them in whatever way they need it, and has inspired me to try to do the same. You are doing it every day on this website by reading the information I provide, adding to it, informing others of what you have learned, connecting others with doctors, clinics, articles, and services that can help us all. We have developed a “web of connectiveness” that continues to spread, thus benefiting all of us.

Dr. Cahill has lived our lives. It took TEN years for her to stabilize her life after her husband’s cerebral hemorrhage, stroke, and spinal cord injury. His memory loss, confusion, and personality changes, altered their relationship, and she is struggling with the same issues as all of us. She is fully aware and grateful that she is only able to have a speaking career because she and one of her daughters combined households. Her daughter and son-in-law help with her husband, and she and her husband help with the grandchildren. She speaks with enthusiasm and humor to inspire everyone to develop these “webs” - to reach out for help, and to reach out to help others.

(I know many of you took issue with one area of the guest blog she did for me last month, but it was our fault for not explaining clearly enough what she meant. When she said that caregiving can sometimes be stress reducing, she wanted me to assure you that she meant ONLY, ONLY, ONLY if you have a very strong support system to help you, and allow you time for yourself. IF you have that strong support system (friends, relatives, and professionals to help you on a daily basis), AND financial security, you are more able to focus on the positive – such as spending time together with your spouse and seeking joy in what they are still able to do, which will reduce your stress. Without that support system and financial security, massive stress is our constant companion, and she fully acknowledges that.)

Now for the little husband story I promised you. We wanted Sid and Brooks (Teena’s husband) to get acquainted, and she and I wanted to visit and chat, since we had not seen each other in months. They live in New Jersey, and flew into Florida very late Wednesday, getting to their Jupiter house at 1 AM. They had not been there since last spring, and opened the door to a chirping smoke detector. It chirped all night. It was still chirping when we arrived in the afternoon. Let me remind you that Sid was in retail electronics for 35 years, and could take apart and put together any piece of electronic equipment. A chirping smoke detector would still be a piece of cake for him. He told her to remove the battery, which she did. Still chirping. All of her extra batteries were in the freezer. (Don’t even ask about that one.) She did have one new one, which she installed into the chirping smoke detector. When we left, in spite of the new battery, the thing was still chirping.

Sid and I arrived the next morning, Sid with his handy “battery checking meter” . Teena and I left Sid and Brooks together – other friends were coming to visit with them during the day, and off we went to the conference. I thought about calling to check on Sid during the day, but did not want to insult him, and figured they would be fine, especially with the other friends coming. (Teena did call after her speech, and told me all was a-okay.)

When we returned to her house, we were there a few minutes when Sid asked if she heard anything. Silence. No chirping. “What did you do? What did you do?”, we asked. “Well”, my husband reported, totally pleased with himself, “You had the battery in backwards. I put it in the right way.” After two days of constant chirping, Teena was thrilled, telling Sid he was a genius; my husband’s ego was boosted, and all was right with the world.

It wasn’t until at least 24 hours later that it occurred to me – Oh my God. He had to get on a LADDER to change that battery. Brooks is physically disabled, and cannot get around much without a walker, so he could not have caught Sid if he fell. My husband, with his poor balance, and diabetic neuropathy, which has left his feet numb, got on a ladder by himself! (Hopefully he did it when the other friends were there.) When I mentioned it to him (freaked out about it is a more accurate description), he assured me that it was a step stool, not a ladder, and that he was holding onto the door frame to steady himself. Since he was completely in tact, no bones were broken, and there were no bruises, I figured he had done okay. And Teena and Brooks had peace and quiet in the house.

©Copyright 2008 Joan Gershman        

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